Rutgers student holds event on campus to raise awareness of rare diseases
There are over 6,000 rare diseases that affect people in the United States.
One Rutgers student who suffers from a rare disease held an event on Tuesday to raise awareness about her disease and how to make progress going forward.
Allysa Kemraj, a School of Arts and Sciences junior, was diagnosed with Ehlers-Danlos Syndrome during her first year of high school.
This disease is a collection of heritable tissue disorders that affect the body's collagen. It can affect skin, joints and anywhere else with connective tissue, according to the Ehlers-Danlos Society’s website.
A rare disease is defined in the U.S. as any disorder that affects fewer than 200,000 Americans at a time, according to the Rare Disease Day website.
These diseases can often be misdiagnosed and severely affect a person’s quality of life.
Kemraj said that she first found out about Rare Disease Day shortly after her diagnosis when she was doing research about rare diseases. But she did not participate until her sophomore year of high school.
“My freshman year I was way too scared to do anything remotely close to it,” Kemraj said. “But my sophomore year I realized it was a disservice to not only my community but to myself to not present for Rare Disease Day because I have information that everyone needs and everyone wants.”
She then got materials from the Rare Disease Day website and held her first event, she said.
Since then, she has participated in the event almost every year and has introduced it to the Rutgers community.
This past Tuesday, she spoke at an event hosted by the Busch, Engineering, Science and Technology (B.E.S.T.) Gives Back group about her experiences with Ehlers-Danlos Syndrome.
There were a variety of people at the event, including B.E.S.T. Hall residents, medical school students and other undergraduates. Kemraj spoke about recognizing symptoms of rare diseases and why and how people should promote awareness.
Other Rutgers students found the information discussed relevant to their coursework.
“You always hear about the same diseases, even in class. You always hear about preventable disease or non-preventable ones like Alzheimer’s and Parkinson’s,” said Shyam Patel, a second-year student in the Ernest Mario School of Pharmacy. “This increases awareness that there are other life-threatening diseases that need to be researched for treatment.”
Kemraj met her best friend at last year’s event, who had also suffered from a rare disease and found out about Rare Disease Day through the Mayo Clinic, she said. They became fast friends despite the suffering from completely different diseases.
“The thing that always excites me is when someone comes to Rare Disease Day and I’m able to talk with them and find out that they have a rare disease too,” Kemraj said.
Because Rare Disease Day is an international event, she said that she has been able to connect with others who participate around the world on online forums.
During the year, Kemraj maintains a Facebook page for Rare Disease Day where she regularly posts information about rare and chronic diseases, as well as well information about the event.
Ultimately, she said that she thinks that having events like this at Rutgers that informs students about rare diseases is necessary for medical progress and student awareness.
“My main goal is to promote awareness amongst my fellow students because a lot of them are literally the future of not only America, but the world,” she said. “We’re going to be the policy makers. We’re going to be the doctors, the researchers, the advocates. So it is very important that we are able to educate ourselves.”
Kimberly Peterman is a School of Arts and Sciences junior. She is a contributing writer for The Daily Targum.